Exocrine Pancreatic Insufficiency

This is an excellent post. I was recently diagnosed with EPI and meeting with a nutritionist who understands this condition was essential. Most nutritionists deal with diabetes and weight problems. I also have Celiac Disease - CD has a much higher rate of EPI than the general population.

Most of the information I have gained about this condition has been from reading medical journals (my background is in traumatic brain injury and vestibular dysfunction - so I am fortunate and have access to medical journals). One thing I found out - which none of my doctors told me is that the medication for Hasimoto's thyroid condition interferes with L-Thyroxine. I changed the timing of my L-thyroxine to late at night - 4 hours after eating.

It is interesting to see how many people on this thread note that their physicians were not much help at all. I found the same thing - and it has been extremely frustrating.

For many people, reading medical articles - if you are not accustomed to these types of articles - can be intimidating. But it really is essential to understanding EPI - because we cannot rely on the medical community for our own health needs.

First you need to see a nutritionist who specializes/has experience with this issue. There is a lot of information on the internet. Your pancreas is not producing sufficient enzymes to digest the food in your stomach when eat, thus the Zen pep/Creon/Panarese, etc. In addition to the compromised digestion, which causes malabsorption issues, you possibly face nutrient deficiencies. My personal instructions were: include, daily, vitamins K/A/D/Coq10/E/B complex/Good multi. Most of these are absorbed better with some kind of oil in your meal. Even taking all these, I still had a ferritin (part of your iron) and B2 deficiency, which manifested in my tongue and it has taken three months of supplements for those to clear, not to mention the medical tests to rule out oral disease of some kind. The iron deficiency developed due to not eating beef or pork. You are advised not to eat pork or beef, as they are harder to digest than chicken and fish and can cause extra stress. I eat a lot of vegetables, dried beans, grains, avocado. Have found that raw vegetables. slaw, salad do not digest well for me, so I only eat cooked foods, or experience pancreas discomfort while the raw items digest. Eliminate processed foods - fast food, chips, candy cakes, canned soups, frozen foods, sugar, as little processed as possible. These have little nutritional value and are harder to digest. No fried foods. I use Daves Killer and Ezekial breads, as they (especially Ezekial) have more nutritional value (for store bought bread) than most of the others. If you aren't familiar with Ezekial it is found in the frozen section, due to lack of preservatives and I thaw, and keep, it in the refrigerator. I use Vegenaise instead of mayo, Violife plant butter and cook with only olive oil. Eat a lot of tune and salmon salad and have a vegetable soup I make and freeze, so I always have something on hand. Have a crustless quiche each day for breakfast, with broccoli, peppers and onions

All of this information is trial and error for ME and working with a nutritionist. I am also pre-diabetic, so my diet is a little more restricted on the carb side. This diagnosis can be overwhelming at first, as they all can, but when you start working with it, you will figure out what works best for you. Good luck and find a good nutritionist and read medical articles about this disorder.

My doctor has given me no instructions/suggestions on changing my diet, just the pancreatic enzymes, so my worsening symptoms are probably due in part to me consuming what I have always consumed.

I dx'd myself with EPI after accidentally happening upon a podcast meant for gastroenterologists. I then told my GI doc that I ticked all the boxes for EPI and she agreed to have me try out Zenpep (samples), which worked immediately! With Medicare and my insurance, I have to go through 30 days of taking the successively more expensive drug before they will cover Zenpep. I'm currently on my fourth one and the problem has gotten worse, mainly the severe pain after ingesting ANYthing; so I skip eating for a day or two to allow my digestive system to calm down. Yes, I take the meds with snacks/meals, and sometimes I'm able to eat a meal without pain every few days or so. My main problem is that my labs have always shown false negatives (one of my sons has the same problem) and I've rarely had a doctor or nurse practitioner who was wise enough to treat my symptoms rather than taking the lab results as the have-all, be-all.